Facebook Is Revolutionizing The Search For An Organ Donor, But Is It Fair?

This week The New Yorker ran a fascinating article called, "To Donate Your Kidney, Click Here".  More and more people are turning to Facebook to try and find living organ donors.  And while many have found tremendous success using this strategy, the article highlights the serious ethical concerns that now face the medical and public health communities in light of this trend.

Concerns About Disparities

The Advocates

While data show that Facebook is the most popular social networking site among online adults, we do not know how social media advocacy skills translate across demographic variables.  In The New Yorker article, Dr. Dan O'Connor of Johns Hopkins University asks "“Whenever you’re using platforms like Facebook, the question is, what kind of person, what demographic profile has the time and energy and communication skills to make this work?” [bolding added]

The Donors

Dr. Michael Shapiro (who chooses not to perform kidney transplants on donor-recipient pairs who met through online advertising) said, “It’s not hard to imagine that if you’re attractive and young and appealing, it’s easier to get people to donate to you than if you’re short or ugly or have a hunchback. And that’s not the way we want the system to work." [bolding added]

While there is limited research regarding Facebook donor-recipient matching, research out of Loyola University offers support for Dr. Shapiro's concerns.  After examining Facebook pages seeking kidney donation, the researchers found that certain types of pages (i.e., white patients and those with more posts) were more likely to have people come forward and get tested to be a possible donor.

Leveling The Playing Field

As with any health or access disparity, public health needs to innovate solutions to narrow the gap.  The New Yorker article discussed Dr. Andrew Cameron (a transplant surgeon at Johns Hopkins) who is working on one possible solution.  He is developing a smartphone application which may level the playing field for patients/families for which social media tools and advocacy resources are less intuitive or accessible.  The app would offer a “template” for those in need of organs to tell their story, and would provide a system for those users to connect directly with transplant centers and social media resources.

What Do You Think?

• Does donor matching on Facebook provide an advantage to certain demographic groups?
• What can we do to level the playing field for those patients/families with (1) limited access to social media tools or advocacy skills? (2) stories that may be "less attractive" to the public?
• Are you surprised that some surgeons (e.g., Dr. Michael Shapiro profiled in The New Yorker) choose not to operate on pairs who meet through online advertising?

Bonus Read: This is not the first time that Facebook has been part of the organ donation dialogue.  Last May I wrote about Facebook's "share life" tool, which allows users to share their organ donation status on their timeline.  Since then, research has shown that the tool is effective in increasing donor numbers.

Facebook Adds Organ Donation To Timeline: Should We "Like" It?

Typically, I post on Wednesdays.  However, with so much chatter about Facebook's announcement, this felt more timely.
Starting today, you can add your organ donation status to your Facebook timeline using the "share life" tool.  If you are already registered, you can share your story about where and why you decided to become an organ donor.  If you are interested in registering, you can follow links to official donor registries.

ABC has been a primary news source for this announcement, interviewing Facebook CEO Mark Zuckerberg, demonstrating how to use the "share life" tool, and discussing myths and facts about organ donation.

Scanning Facebook and Twitter today (especially among my public health colleagues), the response seems to be overwhelmingly positive.  From my perspective, the Facebook tool has the potential to be effective (i.e., increasing the number of registered donors) because it focuses on action.  The tool is not for education.  The tool actually links to registries so that you can sign up.  The tool aims to increase the visibility of already registered donors, which in turn will influence others to sign up.  The tool aims to decrease the stigma and secrecy of talking about end of life decisions by putting it right up there next to your birth date and relationship status.  This may also influence others to sign up.  In previous posts, I have written about public health campaigns that use social media in order to reduce the stigma around an "undesirable" topic (e.g., STD testing).

Although I am 100% supportive of the mission of increasing organ donors and am familiar with the dire need for donations (e.g., 18 people will die each day waiting for an organ), I have a few reservations about "share life":

In today's New York Times coverage of the Facebook announcement, I read a sentence that concerned me (I added the underlining):

"The company announced a plan on Tuesday morning to encourage everyone on Facebook to start advertising their donor status on their pages, along with their birth dates and schools — a move that it hopes will create peer pressure to nudge more people to add their names to the rolls of registered organ donors".

I consider declaration as an organ donor to be a medical decision.  In public health and medicine, we strive for patients and the public to make such decisions from a position that is informed and lacks pressure from physicians or family or friends.  Therefore, I have reservations about people signing up without educating themselves first and/or because they feel pressure on Facebook.  Just a few weeks ago, I posted about "hashtag activism" and how easy it has become to get involved in causes via social media.  Are we as thoughtful when we participate in causes on Facebook as when we participate in real life?

My other ongoing concern is regarding the proper security and use of personal information that is gathered by Facebook.  Will your organ donation status result in particular advertisements being sent your way?  I remember updating my Facebook status to "engaged" 4 years ago and being overwhelmed by the wedding planning advertisements on my page.  There is increasing public outcry regarding privacy settings and the personal information you enter being used for Facebook to attract advertisers and other business opportunities. 

Again, I am 100% supportive of the organ donation mission.  I think the reach of Facebook offers tremendous public health opportunities (including the possible elimination of long wait time for organs).  While that is an attractive outcome, we must always remember to focus on the ethics of the process as well.

What do you think?

•  Facebook has become directly involved with several public health issues (e.g., suicide, bullying, organ donation).  Are their strategies effective?  Why or why not? 
• Do you foresee any unintended consequences from the organ donation tool?
• Will you include your organ donation status on your Facebook timeline?  Why or why not?